Quality of Life Research

, Volume 18, Issue 5, pp 585–595 | Cite as

Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI)

  • Deepa RaoEmail author
  • Seung W. Choi
  • David Victorson
  • Rita Bode
  • Amy Peterman
  • Allen Heinemann
  • David Cella



Most measures of stigma are illness specific and do not allow for comparisons across conditions. As part of a study of health-related quality of life for people with neurological disorders, our team developed an instrument to assess the stigma for people with chronic illnesses.


We based item content on literature review, responses from focus groups, and cognitive interviews. We then administered the items to people with neurological disorders for psychometric testing.


Five hundred eleven participants completed items of the stigma scale. Exploratory factor analysis produced two factors that were highly correlated (r = 0.81). Confirmatory factor analysis produced high standardized loadings on an overall stigma factor (0.68–0.94), with poorer loadings on the two sub-domains (−0.12 to 0.53). These results demonstrated a sufficiently unidimensional scale that corresponded with the bifactor model. Item response theory modeling suggested good model fit, and differential item functioning analyses indicated that the 24-item scale showed potential for measurement equivalence across conditions.


Our efforts produced a stigma scale that had promising psychometric properties. Further study can provide additional information about the SSCI and its benefit in measuring the impact of stigma across conditions.


Neurological disorders Measurement Chronic illness Self stigma Enacted stigma 



This study was funded by the National Institute of Neurological Disorders and Stroke (NINDS) contract number HHSN265200423601C. Deepa Rao is supported by a career development award funded by the National Institute of Mental Health (NIMH: grant number K23 MH 084551). The authors would like to thank the assistance of Claudia S. Moy in making this study possible, also Paul K. Crane for his psychometric guidance, and Patrick W. Corrigan and Nicolas Rüsch for providing comments on earlier drafts of this paper.


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Copyright information

© Springer Science+Business Media B.V. 2009

Authors and Affiliations

  • Deepa Rao
    • 1
    • 2
    • 3
    Email author
  • Seung W. Choi
    • 1
    • 3
  • David Victorson
    • 1
    • 2
    • 3
  • Rita Bode
    • 4
  • Amy Peterman
    • 5
  • Allen Heinemann
    • 3
    • 4
    • 6
  • David Cella
    • 1
    • 2
    • 3
  1. 1.Center on Outcomes, Research and Education Evanston Northwestern HealthcareEvanstonUSA
  2. 2.Department of Psychiatry and Behavioral SciencesNorthwestern UniversityChicagoUSA
  3. 3.Institute for Healthcare StudiesNorthwestern UniversityChicagoUSA
  4. 4.Center for Rehabilitation Outcomes ResearchRehabilitation Institute of ChicagoChicagoUSA
  5. 5.Department of PsychologyUniversity of North Carolina at CharlotteCharlotteUSA
  6. 6.Department of Physical Medicine and RehabilitationNorthwestern UniversityChicagoUSA

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